Hi Lori!
Talk to us!
I was thrilled to find this forum as I live in a remote place--so this is the next best thing as a next door neighbor with MDS..... (that sounds weird! )
Some people have been on here for years, and I've noticed how supportive and responsive everyone is! And worldwide! So rather than narrowing your focus, you are expanding it!
And you can private message people if you don't want to broadcast every thought in your head!
Feel free to PM me--I am new here as well, but it has proved to be an invaluable resource in this fight against MDS.
Best,
Cheri

Hi Lori
I am currently on Vidaza, just finished fourth cycle...next BMB Jan...Not sure of all my particulars, but I will find after those results.
Went from AML to MDS; hoping to still have AML in remission & that Vidaza is keeping MDS at bay....currently, feeling good/using transfusions/neupogen/aransep as needed.. will be starting Exjade any day now....
Hope you are in remission and good luck...maybe the hospital or LLS can partner you with someone locally...
Take care and keep fighting!
Cheri

I'm in Plainfield, IN and go to Indiana University Simon Cancer Center. Looking for individuals with this challenge in this area to perhaps talk with. Thank you! Lori

I live in Franklin. My son has AA and goes to Riley. I'm not super informed on your disease but I do know how isolating bond marrow failure diseases can be. And I hate having to pay to park when going to the hospital. do you use the valet? Our garage near the Riley out-pt was $8 yesterday and that's because I ran in the garage and checked out with 2 minutes to spare before it jumped up to $9. Good luck to you. We go to the clinic on Thursdays so if you ever want to meet up that's when we're on the Clarian campus. Candace

Cheri, So your Induction took you from AML to MDS? I had to have two rounds of chemo. 7 days and then 5 days all in the 5 week hospital stay.

Candace, Good to hear someone else with parking issues. If you ask there is a way you can get passes if your son is hospitalized. You get so many free. We have valet parked - sometimes it is cheaper! But lately we have parked in the garage and walked! Like this doesn't cost enough, huh! I hope you son is getting good treatments. Keep me informed! Lori

Hi Lori
My first dx was AML--oct 09....went thru 3/7 induction chemo....bad reaction....sepsis, 107 temp, life support, 3 week coma...this time last year I was out like a light! Stayed in hosp 2 1/2 month...decided no more harsh treatment...counts were good until summer. Bmb July revealed MDS, AML still in remission...MDS from induction chemo? AML latent? Vidaza working? Stay tuned for results of BMB in January!
But I have felt great this weekend! I believe, ultimately, it's in God's Hands!

Lori, I am in Indiana, south of you. I was diagnosed MDS in Oct. Have been to 3rd Dr. Last one IU Med Center. I'm so confused I don't know which end is up. Where can I go to get some solid answers. Dr. At IU told me to go home and continue to get my blood work done and I Would know when it was time to make another app't. I don't have a clue where to go or turn, any advice? Sounds like you have been at this for awhile, tell me where or whom you see at IU. Lindano

If you want to compare notes with others in Indiana, this thread is a good place for that.

I assume that you'd also like to ask forum members about your MDS. If so, I suggest that you start a new thread in one of the other forums, like the MDS forum or the Tell Your Story forum, so that more forum members will see it.

Hi! I saw Dr. Cripe at IU. He pretty much put my plan of action in place after he got my first BMB results. I am now getting ready to see Dr. Nelson in the Transplant Unit. I say get an appointment with Cripe and have your questions ready. He is not a sit down, hold your hand Doctor, but he is very smart and has done a lot of research and writing on this disease. I really like him. Good luck and let me know if you go to IU. Maybe I'll see you there sometime!

Lori, Dr. Cripe is who I saw at IU Med Center. I guess I don't know the questions to ask, I had 2 BMB's 21 days apart and he did say that he didn't feel that either was a really good measure of how to proceed. He said, I think, that he would probably repeat the test in the next 3 months. So far I know that MDS is what I have and my blood tests are not very good but not real critical yet, so I guess I will just wait and see what the blood tests show. As you know it is a very scary time and I seem to be full of questions. Sounds like you are headed into a very big step of this disease, why did you take chemotherapy and what do you call remission. If I'm asking too many questions just tell me. I am so eager to get some facts from someone going thru this. I have MDS w/5 q deletion and my WBC and platlets are both very low. I have had several iron infusions over several years and that has improved my hemoglobin count but They told me that this doesn't have anything to do with MDS. I really need to make a list of questions and make another app't. I'm so.......glad to find someone to talk to.

Well, first, how old are you? Did you ask Dr. Cripe what you should do? If you want IU to be your facility, you need to tell him that and that you want him as a Dr. and you want a plan of action. I'm surprised he didn't give you one. You could see Dr. Azar. He is friendlier than Cripe, but I like Cripe's knowledge. Maybe he was saying to get another BMB in 3 months to see what was happening? Ask him. You can call and ask to speak to Stephanie, his nurse. She is very helpful. You need to put together a list of questions and take someone with you who can help remember what is said. It is too stressful to try to remember it alone.

I have little choice besides transplant. My stage of the disease is almost to turn to AML, which is more difficult to treat. Lori

I turned 57 3rd of Oct. Other 2 BMB were done locally and in St Louis Breast And Cancer Inst. I am a 3 yr survivor of Breast Cancer. No relevance to this latest diagnosis. Want to stay closer to home so would like to like IU Med Ctr.
My blasts count is 12% which is alarming cause I think 20% is full blown cancer. Don't really know much about all this just don't like the blood tests falling so quickly with no real plan of action. I would love to talk one on one sometime, would that be possible?

I was diagnosed October 7, 2010. I had an episode that noone ever knew what it was... in May of 2010 and landed in the hospital for 2 weeks. I had a pain in my spleen area. I believe something was happening with the MDS then. I went to Cripe then, but my blood counts were going up and he did not see blasts in the blood, so he told me to come back in September for another CBC and if they were not improved he would then do a BMB. Well in September he did one and you see my results. 15% blasts in marrow - MDS-RAEB-II. He told me then that I would need induction chemo and a transplant. And, here I am now. After 2 rounds of chemo my MDS is in remission, which I don't believe would last long if I do nothing at all.

I was diagnosed w/MDS a couple years ago. Kept asking my doctor for my subtype, etc. & getting no answers. He actually told me that I READ too much (I was searching using reputable sites, not Wikipedia...) Sighed when I asked a question requiring him to look at my records on his laptop. At that point, I asked for second opinion. Saw different doctor in same practice (Hux Cancer Center) after getting recommendation from distant family member. HE said he didn't think I had MDS & that my consistently low white cell counts could be normal for me or caused by the Imitrex I take for migraines! My neurologist had never heard of this. Frankly, I feel no confidence in the doctors there now, and insulted & patronized, so I'm considering not even returning for my scheduled blood work. (I had a low IPS score, so was on the "watch & wait" approach to treatment--originally blood work done quarterly, now 2x yearly.) But what is the point of my returning if I don't have confidence in the doctors now;why would I want them treating me if/when my condition worsens? Is Plainfield or Indianapolis the nearest sites to see other doctors specializing in MDS? Any info/suggetions appreciated. Feeling rather hopeless, like giving up.

Is Plainfield or Indianapolis the nearest sites to see other doctors specializing in MDS? Any info/suggetions appreciated. Feeling rather hopeless, like giving up.

It's easy to understand why you are frustrated. If a doctor told me that I read too much I'd say good-bye to that doctor.

The major center nearest to you may be the Indiana University Cancer Center. If you can go out of state without an insurance problem there's the Siteman Cancer Center at Washington University School of Medicine, not much further away but in the other direction. There are a number of good centers with MDS expertise in Chicago too. None of them is right in your backyard, but just because you travel somewhere for a third opinion doesn't mean you have to be treated there.

Getting a handle on your diagnosis is the immediate issue, so I hope you can get some definitive answers from hematologists you can trust.

Brenda, Sorry about the terrible time you're having with the doctors there. I've been so fortunate in that respect. Even so, I traveled 3000 miles (combining the trip with a nice vacation) to get a second opinion at "The Hutch" in Seattle. Neil has given you excellent advice. MDS is a relatively rare disease with so many variations, and it is important to be diagnosed properly by experts and especially to feel confident and comfortable with your medical team. You deserve nothing less! Karen

My sister & I will be going to IU Med Center on Friday to be tested to see if she is a match for transplant. I will be seeing Dr. Nelson.
Anyone been to him ?
I had AA 3/12, treated with ATG 4/12 now marrow test shows MDS. started Revlimid this week.